autism advocacy

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    Community Voices

    Hi I was after some help. I’m wondering how people in the UK get diagnosed with autism by other ways than the NHS. There’s been a mistake with my referral and it has not been done apparently according to my mental health worker so I’m having to go through the referral again which is a 3 year waiting list. Iv been diagnosed with various mental health problems over the years and the last few months I have been exploring the possibility of being on the spectrum with my therapist and mental health worker. Being autistic makes so much more sence to me and how iv been all my life. I’m 34 and a self diagnosis seems to have just clicked with me and explained so much especially the sensory stuff and iv realised iv been “masking” for years. I did a few online tests yesterday and scored extremely high on all of them. I don’t want to have to pay loads to get diagnosed privatley but I’m hoping a diagnosis will open up a new world to me and a way of coping with life. Thank you for reading my comment. #AdultDiagnosis #Autism

    Community Voices

    Autism can be overwhelming on a daily basis. Our minds have 1,000 plus things going on in our heads.

    For me I have so many ideas that it gets overwhelming. One way to help myself to keep a level head is to keep a digital to do list.

    I know some people like paper but paper overwhelms me because it gets messy and it just stacks up.

    Community Voices

    Problem with job coach: are autistic meltdowns behavior? #Autism #AutismAdvocacy #nvld #AspergersSyndromeAwareness #AutismMeltdown

    So after the SOS post I did my boss seemed to be fine with me; she told me to forget about that day and to do busy work while I wait for patients to finish eating and even helped me with my worker’s compensation claim for being admitted to the ER for suicidal ideation. I am holding a grudge against the coworker who caused the incident and plan to ignore him. I will never forgive him for the pain he caused and shall act as though he is dead because to me he is.
    Well my job coach came by and talked to me about it last Thursday and now I might need a new one. She told me that my attitude and behavior is what’s causing the problems and I’m a hypochondriac for looking up things about autism and my physiology. She claims I can control my meltdowns and that I fake blacking out. She thinks me disassociating isn’t real and that even when I get hypoglycemic I can control my actions. She also thinks I’m abusing the accommodation system and that texting my mom during our meetings isn’t normal but rude.
    I try to calm down when I feel a meltdown coming on but I get in trouble for leaving my coworkers when I need a breather. I use all the things it says online to calm down but sometimes I just burst from keeping it in. I even try to eat small snacks but some of my coworkers don’t think hypoglycemia is real and tell me to wait. I get overwhelmed and then black out, see myself in 3rd person and when I comeback I cry because I can’t believe I lost control. This only happens frequently at my full time job, my part time job coworkers know my triggers and how to respond to me. My job coach never seemed to educate my managers about my diagnosis and blames me for everything that happens.
    I want to know if my actions are normal for autism/NVLD people and if disassociation is a real thing. How can I educate my job coach about this and should I look for a new job coach and a new job? Is this behavioral or my brain being wired differently?

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    Community Voices


    Hello, I just wanted to introduce myself and encourage other group members to do the same. My name is Courtney and I am a 40 year old mother to 3 children. My oldest daughter is 10 and has Autism and is non-verbal. I also have an 8 year old daughter and a 4 year old son. We live in Southwest Pennsylvania and I work full time as a field service manager in the human service field. I originally found this site when looking for resources for my own autoimmune conditions and was happy to see that it was a whole community with a variety of topics covered. #AutismAdvocacy #ParentingAutism

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    Community Voices

    They joy is in the journey.

    <p>They joy is in the journey.</p>
    Community Voices

    Live Virtual Event Autistic Adult and Emolyment with Samuel J. Levine. August 10, 7pm Central Standard Time

    <p>Live Virtual Event Autistic Adult and Emolyment with Samuel J. Levine. August 10, 7pm Central Standard Time</p>
    Community Voices

    Autistic Adults and Justicein Employment

    <p>Autistic Adults and Justicein Employment</p>
    Community Voices
    Community Voices

    Very bad day #Ableism

    Having a very bad day. Hormones aren't helping. Had the worst customer service experience with the phone company today. Should've been a simple thing. The ignorance, lack of training, and now difficulty filing a complaint due to the extreme ableism of this company is making me almost want to go nuclear!!! Narrowly avoided a meltdown while in the store today due to denial of my support person, frustration at the ignorance, lack of comprehension of a simple concept ( I know I was communicating clearly. I've had much practice learning the difference over the years.) and clear lack of training of the person I was dealing with, and the person he called at headquarters or wherever, and sensory overload just about did me in!!! Especially when several other customers were all talking elsewhere in the store, and it was echoing!! The lighting wasn't great either, though I don't think it was fluorescent at least.

    I was sooo tempted to go get mom and get her to trade places with me! She was in the car since they wouldn't let her in. I couldn't figure out how to make it work though. Thought it might only make things worse.

    Thankfully I had put some silly putty in my belt pouch the other day after a different bad day recently. It helped some. Still almost had to dig out earplugs and sunglasses! If my hands were free I probably would've but I had my phone and accessories (landline) in a bag in my other hand.

    Without 20+ years of active management of this sort of thing ( many at University) and much help from autistic friends, on practical suggestions, there would've been much more than just signs of agitation and exasperation and frustration for everybody to see!!!

    Now to try to get back to writing my complaint. (In a real email, to be cut and pasted into their form once I have sorted it all out and cleaned it up! Because they don't respect people with communication difficulties and language organization an output and processing issues!) #Autism #AutismAdvocacy #Ableism #Meltdowns #SensoryOverload #accessibilityneeds #Accessibility #accessdenied #CommunicationDevices #CommunicationDisorders

    3 people are talking about this